PV. jak2positive

[Eveg50]

I am on 18 Hydroxycarbomide a week I am finding I can't do my daily tasks i am normally quite active but as my medication as increased I am struggling just holding this mini I pad is strenuous holding my handbag too ,it's worrying

[Kerri2]

That sounds like a lot are your counts coming down.

[Eveg50 in reply to Kerri2]

Yes ,I went Monday the counts are where they want them to be its just this feeling of fatigue they will take me off some if my counts get too low, had a bad day today didn't want to do a thing but at the same time felt restless , I just have to thank my lucky stars as there are so many people worse than me

[Wyebird in reply to Eveg50]

My platelets are about400 I feel so much better now than when they were 450.

[Lainy1]

Hi, I can totally sympathise, I'm on 16 a week and have got terrible bone pain in legs wrist and have a frozen shoulder. I hope you get some relief soon.

Best wishes lainy 🤗

[Mazcd Partner MPNVoice]

Hi Eveg, sorry to hear this, if this continues then you should speak to your haematologist about it. Best wishes, Maz

[Sueworthington]

Hi I am on 11 Hydrocarbamide per week, I started this 4 weeks ago, I have gone from being very active, played golf regularly etc, however at the moment I am really struggling, can't even walk the length of the supermarket, I am hoping this is just temporary, hope you improve too x

[Roger41]

Hi, I am on 14per week. Some times I feel tired. I take my tabs at 2pm.

I sleep solid for one hour. I have kept up the gym for now I am on three visits per week.

I hope this helps. Your body will adapt.

[Jlb700]

I’m now on 19 hydroxy capsuls a week plus occasional venesection for pv I find walking helps me. Some days I feel too tired to make the effort but always feel better after a good walk

[Eveg50]

Walking is not very pleasant for me so may try swimming knee replacement in in one knee and bone on bone on the other ,also suffering with fatigue ,a bit low at the minute sorry for moaning

[Wyebird in reply to Eveg50]

A bit low could contribute to your fatigue. It’s taken me two years to find a way of dealing with et.

[Wyebird]

Hi , I have ET and I’m on 16 tablets a week. I really have to struggle to get to the gym for my yoga lessons and swim. I feel so much better after the excersise.

After seeing the heam I always look at and compare my blood results. Maybe you have a deficiency in something. You don ‘t say what your platelets are, that could be significant.

I agree with Maz. It sounds as if you need to see your haemo.

I do hope things improve.

Good luck

[fairenough]

Hello Eveg 50. I have jakpositive. I'm on 48 a week by 500 mg and must be the most unreliable person in my area, I make so many arrangements and s often ending up by falling asleep instead of putting my coat on. I also have weakness which other people just don't understand. Luckily i have a supportive family, but it can be so very hard at other times,